Sewing, drawing, thinking and writing about life with Ehler's Danlos Syndrome

Category Archives: Mama Needs Cabbage

At some point, perhaps, I will learn. I will finally, for the last time, put myself and my finances through the process of having something investigated only to emerge from that process poorer, more frustrated, and with the answer I already had: I have Ehler’s Danlos Syndrome, and I will never feel “good” again in my life.

I spent $139.00 clams to get the MRI of my shoulder last week. That’s a nice pair of boots, or almost halfway to a pair of BedStu boots. (I KNOW RIGHT?) I had to go in to work late, and the tech was running late, and someone else there wanted to talk to me about my stalker sibling’s made up medical problems (because they are WAY more interesting than real problems). The tech assured me the doctor’s office would have the results the next day.

The short version of how obtaining the results went can be summed up thusly: PCP’s office decided not to answer their phones all day the next day, PCP was out of town, I got the results Friday via a text of the report he got faxed to him. There was a lot of anger, frustration, tears and cursing during this process.

The results? AC arthrosis, which is the same as arthritis except the word arthritis indicates inflammatory change and arthrosis is degenerative change without an inflammatory process. Just in case you wanted to know that. Here are other fun facts about this:

PCP doesn’t think this explains the pain.

I think it might.

There’s nothing, not a goddamned thing, to be done about it.

PCP wants to now go through the whole process again, but with my neck.

But there’d be nothing to be done about it.

And it would cost me the other half of those boots up there.

When will I learn? This time? This is how it is always going to work:

Something hurts.

It hurts all the goddamned time.

I have to modify my life.

IT DOESN’T MATTER IN THE SLIGHTEST THAT WE FIND OUT EXACTLY WHY.

The answer is always this: I have EDS, and I will never feel good again. The end.

Oh my, yes, that is a negative outlook, I agree. But it’s also true. The other thing is, why do I feel like it’s more legit if I know the exact why? Part of me was wanting a torn rotator cuff even though that would be career-ending. OH. That’s why–I am looking for what I feel will be a legit enough reason to leave my job. Thing is, I already have a legit reason, because I have EDS, but I want an iron-clad out, not a soft, hard-to-explain, I-don’t-look-sick reason. I want something that is so clear that I don’t even have to admit to myself that I might be leaving simply because I work with one of the most impossible people in the world and I am starting to give up on the idea that I can win,and also, I am tired of this person taking so much of my energy when right now, I have trouble carrying my own belongings into work each day.

I can hardly carry my own shit, and once I manage to get inside with it all and put it down, I spend the rest of my day with a micro-managing tyrant with the tact and professionalism of an angry rhinoceros. I expend HUGE amounts of energy trying to buffer this person, in whose hands my leash was placed (after FIVE YEARS of working to get it out of their grip) by the new Department Chair, who has no idea what sort of monster he created. The rest of us do, because we all admired how hard it was to get myself off the leash in the first place and that the monster had finally been shrunk down just a bit.

We talked a lot, the spouse and I, about whether or not I can or should keep working. Let’s face it; this person is not worth what I am spending on them, and, despite the money and time and Dr Googling, my shoulder still hurts. And it’s not going to get better, any more than my hands, or my back, or my neck, or my ankles, or my wrists. Will I choose to remain trapped in the rough waters of this medical system? Or will I decide to liberate myself from it, from angry rhinos, and from feeling like I should hang on just a little longer? I don’t know yet, but the trend is going in the Give Up direction.

By “This” I mean the amount of time I devote to handling the administrative aspects of being a chronically ill patient. Take, for example, the number of hours it has taken to try to see this Rheumatologist in Albuquerque. I’ve spent at least 4 hours total on the phone either with the doctor’s office, my insurance, and my PCP and his office. I’ve stepped away from my office to answer several calls as related to this issue and my attempts to find someone who will see and maybe treat me. That’s roughly the same amount of hours I pay my studio assistant per week to help me streamline my studio and art processes.

It also turns out that most of that effort was entirely unnecessary, as only this had to happen:

Insurance “Patient Advocate” (try not to choke while laughing at that title): Do you live in the four corners area?

Me: No. I live in a county outside that area.

Insurance PA: Then because you have less access to care, this doctor is in network for you.

Me: So we didn’t need to file with the prior authorization side and send tons of clinical information to you and get denied and re-file and wait until it was almost too late to book a hotel and find a house/child sitter?

Insurance PA: Er, right.

Me:.

The real kicker is that they asked me those very same questions during the very first phone call over a month ago. I guess geography changes? OH, wait, it doesn’t. Huh.

Now I must spend time arranging a sitter and introducing her to the child/dog/cat. I have to assemble an entire notebook of medical documentation, test results, clinical findings, etc to take with me. I figure if I got paid for all that I’d have made a couple hundred bucks already, you know?

Also, there’s the amount of time and energy it costs me to arrange to attend an appointment. Last Thursday I was scheduled to see a cardiologist at 3:20 in the afternoon. Before I left the house I had to locate my most current echo and blood test results. I had to arrange with my supervisor and my staff to leave early, and make sure that I had planned activities for my class that my senior Work Study could supervise. Then, the doctor’s office called that morning and cancelled the appointment due to the doctor having “an emergency.” I will lather, rinse and repeat the above on Tuesday, when I have an appointment with her at 4:00 pm.

There’s also the amount of time I spend researching my condition and co-morbidities and random symptoms since right now, I don’t have a team to help me manage my care. Dear Dr Google, why do you think I woke up at 12:45 this morning with gnawing stomach again? What should I do about that? What if I feel like it will take one more thing to break this camel’s back in 17 pieces?

If I did get paid for all this work, I think it would work out that I wouldn’t have to pay my insurance for another thing, since I’m mostly doing their jobs for them. It’s as if a patient becomes their own full time job if they want to get even barely adequate care. Instead, I do all the work of the case management aspect of my health care, plus my own full time job–and all that while suffering daily pain and a myriad of unexplained or untreated symptoms and conditions. That seems fair, right?

I’ve had to let the muse go due to intense hip, back, shoulder, wrist and hand pain. No longer am I enamored of my patchwork collection, instead I am judging it wanting and a waste of time. It probably isn’t either of those things but the chronic-pain-colored glasses view it as such. Every step I took yesterday hurt my hips like a wide band across my lap, from deep in the joint to radiating outward over the muscles of my thighs. By the end of the day, of course, it was worse and I lost my composure entirely and had a sobbing fit in my bed while the husband and the dog tried to figure out what to do with me.

I suspect my emotional fragility at the moment is partly due to the above and maybe somewhat influenced by hormones (O, perimenopause, you wretched, wretched bitch). While I cavalierly said I didn’t care if I was once again making a collection of things no one would buy, today I DO care about this and perused my Etsy shop just to make myself feel worse. I don’t know why I cling to Etsy when I haven’t the time to devote to keeping it up. It’s the excuse for my thrifting addiction, “I can sell it on Etsy” but no, no I can’t, not consistently. There are times, like today, when I feel like my constant making of things is foolish and sad since rarely do I have an answer to “What will you do with this?” or “Who would buy this?” Earlier this week I was content to simply be creating, happy to be in the process and satisfied by the process and the products. But the process that makes me so happy and satisfied is the same process that means I was in bed crying at 8:00 pm due to pain.

The Shrink and I are working very hard on being in the Now, since that’s the only thing we have any control over. Last night, eyes leaking, my brain kept saying, “Okay, so this is the Now but the Now is horrible and what if it’s the new forever (no, no, forgive yourself for that and go back to now) Now sucks, Now is awful!” Or, as my husband finally put it (canceling out hours of mental looping and self-criticism) “Today’s just a bad day.” Yes. And I have to learn not to then tack on, “And what if tomorrow is, too? Or worse?” Because I don’t know that, and I can’t determine that until tomorrow becomes the Now. It’s a bit of a rabbit hole.

So today is slightly better so far except that I feel like a giant, potentially leaky vessel of tears. I have a massage and maybe that will ease some of the pain. Maybe I will look at my last assemblage of pieces and find it more favorable than I did yesterday. Maybe tonight will not be a night wherein I find myself freaked out about not having pain drugs, sobbing into the dog’s neck and panicking about the future. A future in which I will possibly drown in clothes, fabric, and partially finished quilts.

Good heavens. I am enslaved to my muse who cares not what we will do with all these patchwork garments. Hell, she won’t even let me think much on how we might be creating yet another burden in terms of clothing I can’t sell. No, I am simply completely smitten with pieces of fabric, quilting with the serger, and debating how many times I will cut something up, assemble it, cut it up again and then assemble it.

Here is the second complete garment:

Now what? This:

Once it’s assembled as laid out, I’m going to cut it up again, into maybe 3″ wide strips, then reassemble. Because I am insane. My shoulders are killing me, my hands are killing me, but I can’t stop. At this point, still a long distance from the finish line, I am already casting about for what else I’ll chop up next.

I know where it all ends, I do, yet—I love being engaged in a project.

Like any costumer worth their salt, I hoard fabric. Some of the fabrics I used in this skirt I’ve had for more than ten years. I used a vintage 1970s pattern for this maxi skirt because instead of gathering (I hate gathering, it’s so tedious) it had a flounced lower section. Once it was done, I got a little bit obsessed with the scraps, and started sewing them together like a crazy quilt until I had enough to make a second garment:

This is an 8-gore retro-style sundress that I patterned myself (or, “made up as I went along”). Each time I joined a piece of fabric in the patchwork phase, I serged it, then topstitched the seam allowance so it would all lay nice and flat. Once I finished that, I corralled all the final tiny bits of scraps and made another small section. I thought it would be interesting, artistically, if each garment had an element of the garment that preceded it, so that is waiting to to see how it will be included in round two, which I did in strips:

What I haven’t decided is if I will take this yardage I’ve made and cut it all up again and re-assemble in a crazier way before I make it into a skirt, or if I’m going to call this the finished fabric and make it into a skirt now. Decisions, decisions.

If you are thinking that this is what’s probably why all my joints hurt, you might be right, but stopping isn’t on the menu when I’ve got a closet full of fabric (plus multiple bins throughout the house) that I could use for this. I plan to list a grouping on Etsy once I have enough, rather than listing them piecemeal as I finish each one. That way it’s a sort of fashion collection. Then we’ll see if they ever happen to sell. That, or I have an amazing new patchwork wardrobe, right?

The other day I violated several of my restrictions and got a stepladder and hauled down a bin of mystery things. In there I found the rest of my vintage aprons and a very large number of vintage handkerchiefs. They have been in a box for over three years, which means I don’t guess I have a lot of plans for them. Thus, it’s probably time to liquidate it down to only the very most fabulous.

This one is silk, from the late 50s, with scalloped skirt and sheer bodice. I added the vintage embellishment to cover two pinholes in the organza, and it really brought the whole thing together. I’m only selling it because I have lost weight and it no longer fits me. It needs a curvy girl with a Jane Russell rack.

This one is a silk or rayon velvet cheongsam (pronounced more like “SheongSaum”) whose age I am not certain of. Bias cut, it will hug curves and is also, sadly, a bit too big for me. The cheongsam is a fashion classic that never goes out of style. In the 50s, they were sometimes called SuzieWong dresses, referencing the exotic Chinese prostitute character played by Nancy Kwan. That term, however, is referencing such a stereotype under the white male gaze that it is not often heard (and shouldn’t be).

I only sell things that I would wear myself, and while parting is such sweet sorrow, someone is going to be The Bomb in either one of them.